Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 They started him on Keppra after the first seizure? Who did this? I would NOT start Keppra after one seizure even if he has a brain malformation. What tests did they do? You need to get a second opinion. One seizure does not warrant getting on an AED. He might only have one seizure every year. Keppra has many negative side effects. You do not want to start an AED unless absolutely necessary. Don't be scared. Seizures will not shorten life expectancy. Most seizures don't harm the child at all. They do more damage to the parents due to stress. -Steve traciloo11 wrote: Well Alec had his first seizure last night while my husband and older son (4) was at the Kings Game...of course. I called 911 and off to the hospital we went. They started him on Keppra. Do any of you know anything about Keppra? What are the side effects, will it work, does this mean he is on this stuff for life, did his life expectancy just diminsh? I am so scared. This was the one thing that I thought he caight a break on. Thanks, Traci ALec 21 months old, righhtside schiz, and areas of PMG or Liss --------------------------------- Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2008 Report Share Posted January 13, 2008 Traci, The fact that Alec had his first seizure at 21 months is hopeful. I'm not an expert but my step daughter does have severe epilepsy. Her's started at 6 months and we have been told that it tends to be worse if they start before the first birthday. I have to agree with Steve's comment, it is unusual for a doctor to give Keppra right at the start. It's pretty heavy duty and not typically a first line drug. As bad and varied as my Step Daughter's seizures are (lennox gastaut) at the age of 15 she's never even tried Keppra yet (expected to start it soon though). Just a thought, you may want to get a second opinion. I'd think they may want to run a 24 hour eeg to get an idea of seizure type, frequency and duration before determining what drug(s) to give. Penny traciloo11 wrote: Well Alec had his first seizure last night while my husband and older son (4) was at the Kings Game...of course. I called 911 and off to the hospital we went. They started him on Keppra. Do any of you know anything about Keppra? What are the side effects, will it work, does this mean he is on this stuff for life, did his life expectancy just diminsh? I am so scared. This was the one thing that I thought he caight a break on. Thanks, Traci ALec 21 months old, righhtside schiz, and areas of PMG or Liss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hi Traci, While I often agree with most of what is posted on the list. I have to disagree with the statements on Keppra. I do agree, however, that you would want to have some other evidence of seizure activity before immediately going to an AED. In our case, , who is 5 and has bilateral perisylvian pmg, has always had abnormal EEG's, but it wasn't until we saw clinical evidence of seizure activity (in his case it was when he was 4 years old and they were complex-partial seizures resulting in brief episodes of staring/daydreaming) that he was put on Keppra. The reason his neuro chose Keppra was because it is one of the newer AED and has fewer side effects in comparison to other AED that treat complex-partial seizures. His neuros opinion was that we should get control over the seizures now, while they were still minor and able to be controlled, rather than waiting until they increased in frequency, intensity and perhaps type of seizure and became more difficult to treat. Our experience with Keppra has been positive. He was quite emotional during the first two weeks as we were getting the dose set and I was convinced that we needed to pull him off of the med, however, after those two weeks, it has been smooth sailing. No mood swings, no change in appetite, behavior, attention, etc. currently takes 350 mg 2x/day and weighs about 38 pounds. Good luck with this phase of the pmg journey. As Steve said, seizures don't have to be scary, this may be the one and only seizure for quite some time or maybe ever. You just don't know. Perhaps this was a sign of an impending cold or virus...not necessarily due to the liss/pmg. But, I would definitely consult with your neuro and get another opinion before starting an AED. And if they suggest Keppra, give it a try. It has worked for us. Best, Krista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 G's seizures have been pretty well controlled - only 3 or 4 in the last 6 months - with Keppra. He's almost 2 yrs. old. He also had Infantile Seizures that were stopped with ACTH. He has weaned off the ACTH without any return of the IS! I'm not sure of the possible side effects. He seems to be doing okay though. As long as the eeg's keep showing the seizures he'll stay on the meds, but the hope is to be able to wean him off, or at least reduce the dosage in the near future. working with a little guy with bilateral frontal PMG and monosomy syndrome (chromosome 1) --- Penny Rubalcaba wrote: > Traci, > > The fact that Alec had his first seizure at 21 > months is hopeful. I'm not an expert but my step > daughter does have severe epilepsy. Her's started > at 6 months and we have been told that it tends to > be worse if they start before the first birthday. > > I have to agree with Steve's comment, it is > unusual for a doctor to give Keppra right at the > start. It's pretty heavy duty and not typically a > first line drug. As bad and varied as my Step > Daughter's seizures are (lennox gastaut) at the age > of 15 she's never even tried Keppra yet (expected to > start it soon though). > > Just a thought, you may want to get a second > opinion. I'd think they may want to run a 24 hour > eeg to get an idea of seizure type, frequency and > duration before determining what drug(s) to give. > > Penny > > traciloo11 wrote: > Well Alec had his first seizure last night > while my husband and older > son (4) was at the Kings Game...of course. I called > 911 and off to the > hospital we went. They started him on Keppra. Do any > of you know > anything about Keppra? What are the side effects, > will it work, does > this mean he is on this stuff for life, did his life > expectancy just > diminsh? I am so scared. This was the one thing that > I thought he > caight a break on. > > Thanks, > Traci > ALec 21 months old, righhtside schiz, and areas of > PMG or Liss > > > > > > > [Non-text portions of this message have been > removed] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hi! has been on Keppra since Aug. 2007. He was very irritable for a couple of wks. But then he went back to his good old self. Thank goodness.!!! has only had 2 seizures, but there hasn't been anymore! Good Luck Dianna , 6yrs old, Bilateral PMG ---- Avenenti ston wrote: > G's seizures have been pretty well controlled - only 3 > or 4 in the last 6 months - with Keppra. He's almost 2 > yrs. old. He also had Infantile Seizures that were > stopped with ACTH. He has weaned off the ACTH without > any return of the IS! I'm not sure of the possible > side effects. He seems to be doing okay though. As > long as the eeg's keep showing the seizures he'll stay > on the meds, but the hope is to be able to wean him > off, or at least reduce the dosage in the near future. > > > working with a little guy with bilateral frontal PMG > and monosomy syndrome (chromosome 1) > > > --- Penny Rubalcaba wrote: > > > Traci, > > > > The fact that Alec had his first seizure at 21 > > months is hopeful. I'm not an expert but my step > > daughter does have severe epilepsy. Her's started > > at 6 months and we have been told that it tends to > > be worse if they start before the first birthday. > > > > I have to agree with Steve's comment, it is > > unusual for a doctor to give Keppra right at the > > start. It's pretty heavy duty and not typically a > > first line drug. As bad and varied as my Step > > Daughter's seizures are (lennox gastaut) at the age > > of 15 she's never even tried Keppra yet (expected to > > start it soon though). > > > > Just a thought, you may want to get a second > > opinion. I'd think they may want to run a 24 hour > > eeg to get an idea of seizure type, frequency and > > duration before determining what drug(s) to give. > > > > Penny > > > > traciloo11 wrote: > > Well Alec had his first seizure last night > > while my husband and older > > son (4) was at the Kings Game...of course. I called > > 911 and off to the > > hospital we went. They started him on Keppra. Do any > > of you know > > anything about Keppra? What are the side effects, > > will it work, does > > this mean he is on this stuff for life, did his life > > expectancy just > > diminsh? I am so scared. This was the one thing that > > I thought he > > caight a break on. > > > > Thanks, > > Traci > > ALec 21 months old, righhtside schiz, and areas of > > PMG or Liss > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Alec is definitely irritable. It has been three days and I see a difference. He is also tired more. I hope this subsides. I really want my Alec back. Re: NEED ANSWERS AND HELP Hi! has been on Keppra since Aug. 2007. He was very irritable for a couple of wks. But then he went back to his good old self. Thank goodness.!!! has only had 2 seizures, but there hasn't been anymore! Good Luck Dianna , 6yrs old, Bilateral PMG ---- Avenenti ston <micha63yahoo (DOT) com> wrote: > G's seizures have been pretty well controlled - only 3 > or 4 in the last 6 months - with Keppra. He's almost 2 > yrs. old. He also had Infantile Seizures that were > stopped with ACTH. He has weaned off the ACTH without > any return of the IS! I'm not sure of the possible > side effects. He seems to be doing okay though. As > long as the eeg's keep showing the seizures he'll stay > on the meds, but the hope is to be able to wean him > off, or at least reduce the dosage in the near future. > > > working with a little guy with bilateral frontal PMG > and monosomy syndrome (chromosome 1) > > > --- Penny Rubalcaba <centworthyyahoo (DOT) com> wrote: > > > Traci, > > > > The fact that Alec had his first seizure at 21 > > months is hopeful. I'm not an expert but my step > > daughter does have severe epilepsy. Her's started > > at 6 months and we have been told that it tends to > > be worse if they start before the first birthday. > > > > I have to agree with Steve's comment, it is > > unusual for a doctor to give Keppra right at the > > start. It's pretty heavy duty and not typically a > > first line drug. As bad and varied as my Step > > Daughter's seizures are (lennox gastaut) at the age > > of 15 she's never even tried Keppra yet (expected to > > start it soon though). > > > > Just a thought, you may want to get a second > > opinion. I'd think they may want to run a 24 hour > > eeg to get an idea of seizure type, frequency and > > duration before determining what drug(s) to give. > > > > Penny > > > > traciloo11 <traciloo11yahoo (DOT) com> wrote: > > Well Alec had his first seizure last night > > while my husband and older > > son (4) was at the Kings Game...of course. I called > > 911 and off to the > > hospital we went. They started him on Keppra. Do any > > of you know > > anything about Keppra? What are the side effects, > > will it work, does > > this mean he is on this stuff for life, did his life > > expectancy just > > diminsh? I am so scared. This was the one thing that > > I thought he > > caight a break on. > > > > Thanks, > > Traci > > ALec 21 months old, righhtside schiz, and areas of > > PMG or Liss > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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